MS Symptoms and family history

New diagnosis and before diagnosis
1

Hello everyone, hope you’re having a nice Saturday.

Not sure where to start with this post really, but let’s give it a go! I’m 34, a mum of two lovely children (my youngest is only 5 months old), and the symptoms I’ve been experiencing the last month or so seem very related to MS. Started with severe headaches, blurred vision and fatigue I have never felt before. Then burning sensations on my arm for several weeks, followed by numb hand, and terrible pain down the same side in my lower back, leg, knee, shoulder and arm. I am awaiting a doctors appointment and am going to ask to be referred to Neurology.

Bit of background history - my mum was diagnosed with MS when she was 35, she is thankfully alive and is now 58, but unfortunately the MS has made her immobile from the head down, she struggles hugely with swallowing and speaking, and has 2 live in carers that support her 24/7. She is fully hoisted also.

I was only young when she was diagnosed so I’m not 100% sure what she was offered treatment wise, but I remember her going into hospital for regular steroids when she had a flare up, and she also tried the injections (not sure which one sorry, this was 25 years ago) to help slow down progression. This didn’t seem to work? She started with RRMS and this turned into secondary progressive, and she then stopped having flare ups and just went down hill mobility wise.

Obviously I’ve seen this my whole life with mum and the thought of having MS terrifies me, I feel like I’ve maybe seen more of the severe symptoms that it can lead to?

Anyhow I’m rambling now, but is there anything I can do aside from get booked into the GP? I’m also booked in for an eye test regarding the blurred vision.

I feel like I’m slowly going mad, can’t stop worrying all day every day, and so worried I won’t see my darling children grow up :frowning:

I have private medical insurance through my job, is it worth using this or just going down the NHS route?

Any advice would be really appreciated right now.

Thank you :slightly_smiling_face:

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Absolutely it’s worth using your private cover - that’s what it’s for. Your GP should be able to make a suitable referral and if he/she thinks that there’s something neurological going on, that will be a referral to a consultant neurologist. What my GP did 25 years ago was refer me privately to the local MS specialist on to whose NHS list I was eventually transferred to confirm the probable diagnosis. BY the way, I’m not offering a view on what might be the matter with you - I have no idea. I am sorry that you have these worries clouding your life at a time that should be so happy (if hectic). I hope that you get some reassuring answers from the medics soon.

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Do you have a GP appointment? If it’s early next week then you may as well stay with that and see what he/ she says. Obviously something is wrong and I’m guessing you will be referred to a specialist for something ( might be MS might be something else ). If it was me I would then use the private insurance to make the appointment with the specialist and bypass NHS waiting times.

It’s worth remembering that although your Mum had MS that doesn’t mean that you will develop it nor does it mean that if you do develop MS it will progress in the same way. Your Mum must have had one of the early Disease Modifying Treatments which, in comparison with the more recent ones are the least effective and these days the general rule is to ‘hit the MS hard and early with the most effective drugs’. So, don’t despair!

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Hi Alison.

Thank you so much for taking the time to reply.

I completely understand where you’re coming from - hopefully the PMI will speed up seeing a neurologist if required.

You know when you just know something in your body just doesn’t feel right :frowning:

Life is definitely hectic, I’m doing my best to stop worrying where possible - my husband keeps reminding me that worrying doesn’t change anything.

1 Like
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Yep. A classic from the ‘right but not helpful’ school of spousal advice. :grinning_face:

Mine says the same, and he’s right too.